Hydroxychloroquine Tapering : So I always been on... - LUPUS UK

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Hydroxychloroquine Tapering

Danielle2419 profile image

So I always been on hydroxychloroquine for 10 years now mostly was 200mg one in morning. However been on 2 a day for quite some time, should I taper it or should it be safe to just go back down to 1. I have done before with no issues!

19 Replies

Hi.i think you should be asking your Rheumatologist for advice as surely they are the ones giving you your dosing instructions .I've been on hydroxy for 4 years and have never taper down from 400 mgs a day. SML

I've quite often switched between the two doses depending how well I am. Hydroxychloroquine has a really long half life, so it doesn't cause any problems.

Danielle2419 profile image
Danielle2419 in reply to marypw

Yeah this Is exactly what I have been doing so il probably do that and should have no issues. Thanks

Tiggywoos profile image
Tiggywoos in reply to marypw

Hi MaryIt does confuse me that though about the long half life because if that’s the case why do we have to take it every day ? 🙂

Hi Tiggy thought you might find this intetesting .....i did xx

Half-life

Oral hydroxychloroquine has an absorption half life of 3-4 hours.2,13 A 200mg oral dose of hydroxychloroquine has a half life of 537 hours or 22.4 days in blood, and 2963 hours or 123.5 days in plasma.13 A 155mg intravenous dose has a half life of 40 days.

This is fascinating 🧐.. My little pea brain will need a while to compute 😂. Is it fair to say that as the absorption half life is quite short that’s the reason for needing to take it daily ? Or have I got that completely wrong 😑 😂xxx

Im only guessing but Im assuming its because it is a such a slow acting drug for our illness 🤷‍♀️

For malaria prevention it's 1 tablet a week that has to be taken on the same day and is calculated on body weight which is another reason for not messing with the prescribed dosage. X

Good point about the body weight calculation . Every day is a school day 🤓and I’ve learned what absorption half life is 😊xxx

marypw profile image
marypw in reply to Tiggywoos

It takes a long time to build up to a therapeutic level in the blood - so you take one tablet a day to keep it at that level. But if you reduce the dose or stop it, that takes a long time for the levels to drop.And yes, the appropriate dose does depend on your body weight - mine is about 300 mg per day - you can get that by alternating between 200 and 400 mg per day. The main risk of taking a higher dose is to your eyes, which is why its really important to get your eyes checked regularly.

Hope that helps a bit.

Tiggywoos profile image
Tiggywoos in reply to marypw

Thank you and I love your cat 🐈 😘x

That explains why it took 6 months to work ! 💡 😉x

This is interesting about Hydro the only time I had weight absorption was with Steroids when I had Organising Pneumonia in both lungs and that was calculated by weight I take one 200 Hydro a day but early days and need to complete the three months to see if there has been any results

Good luck. .it takes 8 weeks to start to work and 6 months for full effect so I hope you find it works for you xx

That's a question for your doctor. Nobody hear could tell you.

Hi Danielle, I have been on Hydroxychloroquine for 9 years and it has fluctuated with extremes of 2 tablets twice per day (during a bad flare) to 1 tablet Monday, Wednesday and Friday each week (during 1 winter), but NEVER without the authority and advice of my Rheumatologist. I have never tapered down to lower doses no doubt due to the nature of the drug and its half life as SML has mentioned. I have currently just gone up to 1 tablet per day due to symptoms increasing with the sunnier weather and longer daylight hours after seeing my Rheumy last week who recommended this for the summer, then I expect to be going back to 1 alternate days. But ask your Rheumy first. Take care. 🤗xx

I find the amazingly honest and individual anecdotal stories and evidence on this forum to be invaluable with respect to medication and everything else. Agree with accurate absorption, half-life and therapeutic information, and as a nurse prescriber, I am able to offer medication advice. ADME is an important acronym to understand the body and drugs: Absorption, Distribution, Metabolism, Excretion. HCQ taken orally is rapidly absorbed and metabolised by the liver, binds really well to the tissues in the body, and particularly concentrates in the retinal structure at the back of the eye. Half- life: the time it takes for a drug’s active form to reduce by 50%, which depends on body processes and is about 45 days for HCQ. Hence reaching therapeutic levels takes time. Importantly we are all different, genetically and otherwise and our reactions are always individual and varied. Body weight is obviously important when considering problems such as potential toxicity (lower weight being potentially more dangerous with higher doses of HCQ). In the UK, HCQ is licensed at 200-400mg daily dose (maximum dose 6.5mg/kg per day), is very toxic in overdose and difficult to treat; retinopathy eye damage is a major risk and that is why annual eye checks are needed. Caution is needed when HCQ is co-administered with azithromycin type antibiotics due to an increased risk of cardiac events; and also there has been some recent research which revealed psychiatric reactions in newly treated people within the 1st month of treatment. Lots to think about with every drug we consider taking, monitoring requirements and safe levels etc. Dose increases or decreases should always be made in conjunction with a prescribing healthcare professional. Hope putting all info together helps :)

I take 300mg per day and you can get that dose now in one tablet in the Blackrock brand

Hi,

Two points worth mentioning, perhaps due to my punctiliousness?🧐

With HCQ the dosages 200-400mg/day should be based on body weight calculations. I have SLE, DLE, lupus nephritis, type 1 diabetes, diabetic maculopathy and retinopathy both eyes (laser treatment for both eyes🥺😰) etc etc.

Before covid lockdown, over 2 years ago I was prescribed HCQ 2x200mg/day but my ophthalmologist and I decided to halve the dose to be on the safe side. HE could not decide whether my retinopathy was made worse by HCQ OR if it was a diabetes complication? I’m happy with half the dose. It’s working so why take more if one pill does the “job”?

So when you talk of “tapering” for HCQ the choice is far less complicated than for eg Prednisolone (systemic steroid) when I was on 50mg/day for 1 month >>>35mg/day for another month etc then to 5mg/every two days =2.5mg/day currently.

My thinking is this!

HCQ is toxic and if one pill keeps flares away why take two?

Of course discuss it with a specialist doctor but even my ophthalmologist was dithering!?

The Royal College of Ophthalmologists have published and are aware that HCQ optical toxicity is rare but can happen!👆

Note that rheumatologists do not have detailed knowledge of optical HCQ induced toxicity in us lupus sufferers!!! Hence yearly eye screens are important. Difficult to decide but for me reducing HCQ made sense.

Xx

Betty909090 profile image
Betty909090 in reply to Suvi8901

Hi Suvi,

Just wondering but if you’ve already got retinopathy and the more serious maculopathy and assuming your lupus is well controlled why bother taking HCQ anyway?

It’s one drug less and without the risk of more ophthalmic toxicity!🧐

👆❤️

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